Mario Negri Institute for Pharmacological Research, Milan, Italy.
Patient. 2011;4(1):55-65. doi: 10.2165/11535550-000000000-00000.
As part of the development of the Italian National Consensus Conference investigating the period from the hospital rehabilitation of patients with severe brain injury to their return to the community, a working group was appointed to identify the needs of brain injury patients and their families in Italy.
Two postal self-administered survey questionnaires were carried out: one targeted families of patients with severe brain injury to evaluate their objective and subjective burdens and needs; the other focused on the viewpoints of volunteer associations helping people with severe brain injury. Issues explored were quality of discharge from hospital (information received, family participation, etc.), needs of the family (work, financial resources, spare time, relationships with friends and other relatives), and the viewpoint of volunteer associations.
A total of 234 families (54% of sample) of patients (69% male, mean age 41 years) with severe brain injury returned the questionnaire. Most said they had been involved and informed in the hospital discharge process; about 17% had not been involved at all and only about one-third of families received satisfactory support during the discharge phase. Few families received any help from community social services (10%). Almost two-thirds of families had experienced financial difficulties and, in many cases, one family member had to change his/her work situation. Families' social relationships, travelling, hobbies, and spare time were significantly reduced. The 57 volunteer associations who returned the survey (84% response rate) confirmed that their members had experienced the same difficulties.
Considering the difficulties and problems documented by these two surveys, more research is needed on effective interventions to support patients with severe brain injury and their families, particularly during the discharge phase from hospital to home and community life.
作为意大利全国共识会议的一部分，该会议旨在研究严重脑损伤患者从医院康复到返回社区的阶段，一个工作组被任命来确定意大利脑损伤患者及其家属的需求。
进行了两次邮政自我管理的问卷调查：一次针对严重脑损伤患者的家属，以评估他们的客观和主观负担和需求；另一次则侧重于帮助严重脑损伤患者的志愿者协会的观点。探讨的问题包括医院出院的质量（所获得的信息、家庭参与等）、家庭的需求（工作、财务资源、业余时间、与朋友和其他亲戚的关系）以及志愿者协会的观点。
共有 234 名严重脑损伤患者的家庭（54%的样本）（69%为男性，平均年龄为 41 岁）返回了问卷。大多数人表示他们参与并了解了医院出院过程；约 17%的人根本没有参与，只有约三分之一的家庭在出院阶段得到了满意的支持。几乎没有家庭得到社区社会服务（10%）的任何帮助。近三分之二的家庭经历了经济困难，在许多情况下，一个家庭成员不得不改变工作状况。家庭的社会关系、旅行、爱好和业余时间都明显减少。57 个返回调查的志愿者协会（84%的回复率）证实，他们的成员也经历了同样的困难。
考虑到这两项调查所记录的困难和问题，需要进一步研究有效的干预措施，以支持严重脑损伤患者及其家属，特别是在从医院到家庭和社区生活的出院阶段。
